Paralyzed since I was 18 years old, I have spent much of the last 30 years thinking about the reasons why the social life of crippled people is so different from those who ambulate on two feet. After reading about the so called Ashley Treatment I decided it was time to write a book about my life as a crippled man. My book, Bad Cripple: A Protest from an Invisible Man, will be published by Counter Punch. I hope my book will completed soon.

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Sunday, December 21, 2014

Mortality: It's About Living

Brittany Maynard has quietly slipped away from the media's attention. For me and many others opposed to assisted suicide this is a great relief. I spent far too much time talking, thinking and writing about Maynard and the slick ad campaign waged by Compassion and Choices. I wish her family well as they endure the grieving process. I know all too well grieving the death of someone you loved is a never ending source of sorrow. I have been pondering end of life issues the last few weeks. Winter is settling in where I live. The days are short and the nights are long. It is cold and crisp. The end of the year is near and this always makes me retrospective. I miss my son who lives in Seattle and he will be celebrating his first adult Christmas away from home. I have been looking at many cherished photos of him when he was a little boy. He was a cute kid but a royal pain in the ass for his secondary school teachers to handle. Think smart and subversive and that is my son. The apple does not fall far from the tree. I am happy to take my share of the blame or credit and this has me thinking. What sort of job did I do as a father? What will he remember? Will he remember how I lived or died?

Mortality is something feared but ever so much a part of life. Ashes to ashes dust to dust--famous poetic words that do not appear in the Bible. The phrase appeared in the Book of Common Prayers. Oh, its biblical for sure. The entire phrase reads as follows:

In sure and certain hope of the resurrection to eternal life through our Lord Jesus Christ, we commend tp Almighty God our brother [name]; and we commit his body to the ground; earth to earth; ashes to ashes, dust to dust. The Lord bless him and keep him, the Lord make his face shine upon him and be gracious unto him and give him peace. Amen.

Peace, graciousness, and tranquility. I wish this for all those approaching the end of life. Those that advocate for so called death with dignity legislation or the legalization of physician assisted suicide make me shake my head in wonder. Rather than being paragons of virtue, I find those that claim "My life, my choice my death narcissistic if not dangerous. There are just too many my's the the4 Compassion and Choices tag line. Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are born to the second we die. The method of our death means little. Here I refer to the physicisal process of death which is typically a long slow arduous decline to oblivion. I for one do not want to be remembered for how I die but rather how I live. Sadly, Maynard will be remembered for how she died. I find this tragic. No one should be remembered for the way they died. It is a tiny part of one's life and typically not within our control. Living is the hard part and death should celebrate a life led. Maynard do not need to end her life as she did. Other options existed. Other options existed for others who have brain cancer. While Maynard's end of life story went viral another story was largely ignored. Adam Purmort lived and died in Minneapolis. He was married and an art director. He had a son. He also had brain cancer and died. He and his wife Nora created a website My Husbands Tumor. Link to the archive: http://myhusbandstumor.com/archive Purmort must have been a fun man to hang around with. I loved his obituary in the Star Tribune. No tears, not dull, just irreverent:

Purmort, Aaron Joseph age 35, died peacefully at home on November 25 after complications from a radioactive spider bite that led to years of crime-fighting and a years long battle with a nefarious criminal named Cancer, who has plagued our society for far too long. Civilians will recognize him best as Spider-Man, and thank him for his many years of service protecting our city. His family knew him only as a kind and mild-mannered Art Director, a designer of websites and t-shirts, and concert posters who always had the right cardigan and the right thing to say (even if it was wildly inappropriate). Aaron was known for his long, entertaining stories, which he loved to repeat often. In high school, he was in the band The Asparagus Children, which reached critical acclaim in the northern suburbs. As an adult, he graduated from the College of Visual Arts (which also died an untimely death recently) and worked in several agencies around Minneapolis, settling in as an Interactive Associate Creative Director at Colle + McVoy. Aaron was a comic book aficionado, a pop-culture encyclopedia and always the most fun person at any party. He is survived by his parents Bill and Kim Kuhlmeyer, father Mark Purmort (Patricia, Autumn, Aly), sisters Erika and Nicole, first wife Gwen Stefani, current wife Nora and their son Ralph, who will grow up to avenge his father's untimely death. A service will be held on December 3, 2014 at Shelter Studios, 721 Harding St. NE, Mpls 55413 at 6 pm.

When Purmort and his wife wrote the above they laughed hard and cried harder. But they had fun and celebrated a life well lived. When Purmort died his wife posted the below on line. I dare you to read this without tearing up:

It’s over.

It wasn’t a war or a fight. Those things have rules. This was more like Aaron getting in the ring with the Mohammed Ali of cancers, and smiling for round after round after he got his teeth knocked out and his face rearranged.

Ding.

It ended today at 2:43pm, in the middle of a run-on sentence, my head on his heart and my arms around him in a hospital bed built for one, but perfect for the two of us. We’ve spent the last three years in a variety of hospital beds. We were engaged in the light of a heart rate monitor, snuggled together just feet from his mother on the night of his first seizure. He let me sleep next to him before brain surgeries, even when I was 8 months pregnant and my belly pushed on his IV cords. Our Ralph crawled for the first time in a bed on the oncology floor, desperate to get to the laptop where we were watching The Sopranos after Aaron’s infusion. We snoozed and watched countless movies and TV shows in those little beds, which somehow never felt too small for our tall bodies. Yesterday I spent hours in bed with him, playing songs we loved and remembering stories from our relationship, thanking him for everything he brought to my life and letting him know it was okay to go and chill in the other world with our baby and my father.Today we took our last nap in our last hospital bed, in our home, under a blanket that Megan sewed for our wedding.

It’s okay. It’s okay. Thank you. We had so many good years. Not enough, but really good years. You were so good. You were so good to me. I love you. I’ll keep you in my heart, forever. It’s okay. He breathed out, and I readied for the sharp inhale that would follow 8-10 seconds later, rattling through his body. It never came. That’s how it ends. One quiet second.He was here, and then he was gone. It was tangible, this sudden hole that appeared in the center of the universe when he left his body to become everything all around me, just as he promised to do.But we are stardust, and our bodies are just vessels to help us navigate this earth and to eat Taco Bell. I laid with his body and soaked in his warmth. We dressed him in head to toe J.Crew and his best Nike Dunks. I didn’t even know they cremated you with your clothes, but he’ll be all mixed together with some of his favorite things and the finer things were very important to this man.

Before his first surgery, I stole a marking pen from the surgeon and drew a small heart on his hand. Not so much to reassure him, but to reassure myself. Tonight, I found the same one deep in an old make up and at the urging of his mother, left the same small heart for him with the same stolen marker. I know what Aaron always knew: it might not be true right this second, but it’s going to be okay.

I admire this man. He did not turn his end of life into a made for media event. He and his wife celebrated his life. They had fun writing an obituary. Really, who does this? Few have this sort of wild creativity. What struck me the most though, was that Purmort's son will be able to go back and read about how his parents met, what music he liked, his work life, and how how he died. His death that was not funeral dirge but celebration. Purmort was the antithesis of Maynard. While his end of life experience got some media attention it was dwarfed by Maynard. Everyone had an opinion about Maynard--positive and negative. Purmort made people laugh and think. He enjoyed life to the fullest and died in the arms of his wife. He led a life worth living. A life worth living. That is what people should be remembered for.

5 comments:

Wow. Not only was Aaron Purmort a remarkable guy, but his wife's writing is brilliant - intimate and revelatory without any hint of exhibitionism, a rare feat even from a person *not* under the strain of losing her beloved partner to cancer. Few people have such a gift, to communicate their private journey in such an uncorrupted way. And Aaron gave her a journey very much worth sharing.

In contrast, we know next to nothing about Brittany Maynard's private journey. Her public narrative was pre-fabricated and merely waiting for the right face to attach to. We can only guess at her inner process, at the substance of her interactions with her family, and at the personal legacy she left with those who loved her. Her public legacy was scripted by someone else - with her buy-in, certainly. But the chance to feel that you've made a difference has got to have a compelling appeal to a woman facing a shortened life. I don't agree with the message, but I can see how it must have looked to her like an opportunity to give meaning and purpose to a fate that otherwise felt senseless. She was in no position to take the broader perspective of the harm done when the medical community gets involved in endorsing assisted death, thus bringing a whole universe of biases to bear on the assessment of which deaths to endorse.

C&C used Brittany as a human shield - it has proven next to impossible to critique the message without seeming to attack the woman herself. Her public portrayal is far from the totality of who she was, and I don't doubt that her choices, made in good faith, felt like the best and most authentic path within the constellation of her private circle of loved ones. There is nothing to be gained, now, by wishing for a different path for them. Her private legacy belongs to her and those she loved. The question is how to reduce the harm done by the manipulation and promotion of her public narrative. And I think you're quite right that counter-narrative from voices like Nora's are the most powerful antidote. Aaron's story deserved this signal-boost, and we're all richer for it.

Lynn, Excellent comment. Maynard is but one of a long line of people Compassion and Choices has exploited. The emotional ploy to advance assisted suicide never changes. The only thing that made Maynard different was the fact she was beautiful. Yes she was above any critique and a human shield, to borrow your words, that derailed any nuanced discussion. Sad to me that a man like Purmort story gets so little attention. What a wonderful couple he and his wife made. It was all about living to the very last breathe he took. What he and his wife wrote was far more intimate and touching than any interview with Maynard. This is a real problem with made for TV programing of the sort Compassion and Choices deep pockets fund. I have no clue who Maynard was. I get a real sense of what Purmort was like.

Thanks for this great post, Bill. I love this, "Life is not about death. Life is about living. Life is about squeezing out every ounce of energy from our body. Life is about living to the fullest from the second we are born to the second we die. The method of our death means little." I wish I could memorize it so I can say it to the people I know who are all gung ho about their death with dignity nonsense. My response is "I wish we could all focus on a life with dignity." But, some of these people, I've come to realize, are in love with death.

Purmort was *ignored*?! On what planet? His obituary was the darling of every Facebook/Tumblr/Pop-Culture site that loves doing the, "And you won't believe what happened NEXT!" headlines. Even local (online, at least) papers covered, "Obituary Reveals Man's Secret Identity."

As for C&C -- as you know I am pro-choice about the chance to end ones life when nearing death. But I despise C&C for the same reasons I despise groups like PETA and Greenpeace -- right idea, horrible execution. (Erm. No pun intended. Sorry.) The argument that you have to shout loudly and aggressively (and fudge data) to be heard is as wrong-headed as using the excuse "sex sells" for advertising that is demeaning to women.

Honesty, reality, and quiet dignity may not get you all the press coverage, but it should get the job done -- and are you about getting things done or making a name for yourself?

Moose, Purmort was virtually ignored in comparison to Maynard. Yes, he was in most newspapers and NPR picked up the story. Let's say a few million people heard about Purmort. Even a few million people dwarfs in comparison to Maynard. She was national and international news. She was on the cover of People magazine and tens of millions heard her story as packaged by Compassion and Choices. I have no idea what Maynard was like as a human being. She was all about death and used by Compassion and Choices as a packaging tool. Purmort was about life to its fullest. I prefer a life story of life filled with love. I got a sense of the man and his wife. Purport appealed because he was so human. One last point, we obviously disagree about assisted suicide but it is rewarding to know despite our differences we are mutually respectful